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  On 3/20/2011 at 4:23 PM, GlutenFreeManna said:

Thanks. Just curious is there some reason you need to "prove" it? It sounds like your body has given you all the proof you need. You could look into Enterolab if you really need the piece of paper with a positive test result. They do not diagnose celiac, they only tell you if you are gluten intolerant based on stool samples and they do genetic testing too I think. It's expensive however and insurance usually doesn't cover it.

You're welcome. I am having to prove it for medical reasons that are personal.

  On 3/20/2011 at 3:21 AM, GlutenFreeManna said:

This sounds more like a wheat allergy. Celiac disease or gluten intolerance is not an allergy, it is an autoimmune disease. Have you had IgE testing done for wheat alllergy?

I am currently going through this with milk. I started have anaphylactic reactions to anything with milk. I'm waiting on drs appointments to get offical allergy testing but I have heard it's unreliable. I have one on Monday in which I will ask to get an epipen even though I have not had allergy testing done yet. Other people with life-threatening allergies have told me it is fairly easy to get an epipen after a reaction. If your allergic reactions have been documanted by ER visits or even by your dr you should not have any problem getting some life saving meds. Don't ignore this even if you tests come back negative. You could test yourself with barley to see if your problem is with gluten or with wheat, but don't do that until you have an epipen given your past reactions to wheat. In the end you may have to settle with not knowing if you have celiac or a wheat allergy (some people even have both). The result of having to avoid wheat is pretty much the same no matter what yoru diagnosis is. Only difference is if you are allergic to just wheat you can have the other gluten grains.

My doctor had two tests done one for wheat allergy the other for celiac disease. I can't have any wheat whether it be barley, rye etc. Thanks, even if/when it does come back negative I will find other ways to prove it. Good luck with your dairy testing.

  On 3/20/2011 at 2:24 AM, psawyer said:

The blood tests in the celiac panel will not detect an allergy, no matter how intense. They measure the antibodies produced by the autoimmune reaction to gluten. Those antibodies have a limited life span, and will only be found if you are eating gluten on a regular basis.

An allergic reaction to corn (or anything else) will not affect those antibodies.

Not something I defiantly did not want to hear, but thanks for being so frank.

  On 3/20/2011 at 2:21 AM, AzizaRivers said:

I am aware that celiac reactions vary greatly from one person to another, and some celiacs have reactions similar to this, but I think it's important to mention that you should consider the possibility of having an wheat allergy rather than celiac, particularly since you were self-diagnosed so I'm assuming that means you never had an endoscopy or anything that would indicate intestinal damage. Since you have a severe corn allergy, consider that it may be a wheat allergy.

If you have been gluten free for a year already and feel better that way, by all means keep doing it. If you've been gluten-free for that long there's a high likelihood that your results will be negative for celiac even if that's what it is. You know gluten/wheat makes you extremely ill, so regardless of your results, don't eat it! And see about getting an Epipen if you haven't already. You don't want to go into anaphylactic shock without one of those nearby, and it seems that's where your reactions could be heading.

I know it's celiac disease because my grandmother has it. Our reactions are the same. It is only genetic, and yes she did get tested..I meant to say I have had celiac for 2 years, but prior to that I have also been lactose intolerant. Thanks for your help I will look into an Epipen.

  On 3/20/2011 at 2:07 AM, T.H. said:

Yeah, afraid the test will be negative if you've been gluten free for a year. Since it's not an allergy, the allergic reaction to corn wouldn't affect the test, though.

Was your doctor aware of your gluten free status when the test was ordered?

If they were, and are still trying to diagnose you this way, they are simply very celiac ignorant. A survey study of GI doctors around the world found that over 50% of them would choose this (incorrect) way of trying to diagnose a celiac who has been gluten free for a long time, so your doc wouldn't be alone in this.

Re: the corn allergy, if you haven't yet, i would really recommend checking out a corn allergy site, because that stuff is in an insane amount of things. Especially if you are having a severe reaction like this, I imagine you need to know.

Iodized salt always has corn, citric acid can be corn contaminated, many tomatoes have a corn based spray on them for ripening, even paper plates sometimes have corn starch between them to prevent sticking - it's all over the place, ya know?

But here's the thing. Even if I eat a crumb of wheat, my reaction is severe, even life threatening. This is why she still ordered for the test in hopes it may still show up. Even if I breath in flour my throat will start to close let alone eat any wheat for a test to prove it. I'm basically caught in a hard place. And am hopeful my test may turn out positive. Thanks for the help.

Doctor sounds like he has noooo idea what he is talking about. Keep trying to convince your sister that he is WRONG. It is only going to hurt your niece if she continues to eat wheat.

I had my self tested for celiac disease two days ago, (Friday)through blood work. I think the test was called IgA and have not eaten wheat/gluten for almost a year.(I self diagnosed my self)However, I have recently found out I am allergic to corn, and the day I was to get tested I woke up with a hive on my mouth, a rash on my face, and was having a hard time breathing, my lungs were getting tight. So, my question to you all will my test results have a good chance of showing I have celiac disease now that corn was part of it?

  On 9/14/2010 at 1:44 AM, missceliac2010 said:

I had a similar and strange (while driving) foggy, dizzyness experience the other day. I was driving my kids to school and then heading to work. On a major freeway, I got very dizzy and foggy-headed. My son yelled "MOM, WATCH OUT!" (He's 13.) HE had to grab the wheel and put us back in our lane!! Oops. I was veering towards a big rig next to me.

I pulled over, got my wits about me (as much as possible), pulled it together and made our way to my Moms house, about 10 mins away. I called my work and told them I was sick, and had my Mom take my boys to school. (I got lucky...My Mom is in the middle of moving to another city and changing jobs and happened to be home.)

I called my doctor and spoke to him, and he basically said he didn't know what happened. Doc said it could be anything from low blood sugar, a glutening, or a lactose allergy reaction. I went right to bed, and woke up 4 hours later still a bit foggy headed but overall much better.

Anyway, your post intrigued me, because we are in similar boats. I was glad to see the current and future responses.

Good luck. You are not alone!

Heather

Hopefully some of these answers can help you too. Thankfully, I had my mother with me the last time this happened to me. Same here I had to pull over and let her drive. Look into the drinks with electrolytes in them too.

  On 9/13/2010 at 5:03 AM, sandsurfgirl said:

I had that problem for months and my doc said it was dehydration and electrolytes. Celiacs and people with other autoimmunes disorders are very prone to dehydration. When I started being very careful to hydrate in the morning and get electrolytes first thing I improved and after about a month it went away. Funny enough, my electrolyte levels came back normal on the blood tests.

I tried about 5 different natural electrolyte supplements and they made me really sick. The doc said just drink regular old Gatorade and it was life changing.

I drank a small bottle of Gatorade with breakfast every single morning. I sipped water all day long and if the dizzy spells or shakiness came back in the afternoon I would have more Gatorade.

People on here give me a hard time about Gatorade because it isn't "natural" but it was the only thing that worked and it made me functional when everything else failed.

That makes sense, but you know I can't drink gatorade with out getting sick. So I stopped drinking it years ago. Is there any other type of drink you could recommend?...Thanks all soo much for your feedback.

I have been dealing with celiac disease for a while now, but noticed when I drive in the morning I am disoriented and in a daze. Even after I have eaten breakfest. I become shaky and nervous. Except as soon as 11ish Noon I am fine and am sharp to drive. All the symptoms go away. But this is every morning and has been like this for a loooong time. I am on a strict diet of gluten dairy free foods. And I take a bunch of my vitamins every other day. Can some one help me please? Does celiac disease cause this? Any one else suffer this. I don't have insurance so I can't go to the doctor.

  On 3/30/2010 at 3:04 PM, tarnalberry said:

Tylenol is unlikely to do a whole heck of a lot - wrong type of pain med for the job. You may find that taking either ibuprofen or naproxyn sodium (Advil or Aleve), starting a two or three days before the pain starts, and continuing until it's over, helps. Starting it ahead of time is very important.

Other things, like taking extra calcium and magnesium can help. You might check into menstrual massage (I preferred the variety where I lie face down on the floor, and my husband uses his foot (with a surprising amount of pressure) in the right spot on my back so there is pressure on the abdomen). And acupuncture is also thought to help.

Tyleol is my only option. I am allergic to all the ones you mentioned. Maybe Pamprin may help. I will get on more calcium. Hopefully this will help me greatly. The menstrual massage sounds helpful too.

The past 3 months every time I get my period or even a few days before I do, I am hit with horrible pain. My uterus muscle contracts pulling down and doesn't relieve its self. When this happens it starts to pull down my ab muscles, then my side muscles and lower back, because they are all attached. The pain is AWFUL. It pulls so much I start to vomit. I feel like I have the body flu every time. My joints and bones and muscles hurt ALL over my body. I am stuck in bed for a week. When I have to get up I have to walk on my hands and knees because my uterus wont relax or my ab muscles. I take tylenol but nothing helps. It has been like this for three months, every period. PLEASE, some one help me on what to do! My period is trying to get kicked started again and my muscles are starting to pull. I know celiac disease does this, but don't know how to get it to stop. Does any one go through this? How can I stop it, please?

  jerseyangel said:

This is perfect! I think you should bronze it

But to the original question, I agree with the rest that Celiac is forever. It's ironic that childbirth can actually trigger the disease. I also had symptoms during childhood that seemed to disappear during my teens and early 20's. After the birth of my second child (c-section) I began to have symptoms again, and a bout with the flu in 2003 put me over the edge and I began to have severe, debilitating symptoms.

I got hit with a real bad virus when I was 25 and that affected my stomach and intestines, and had symptoms too, BUT they dissapeared as well, and didn't really take off till I had turned 28, I am almost 29 now. I was under severe stress which I know woke it up.

  gfp said:

Regardless you have had this since birth ...

The symptoms may have been masked for a part of that time but they were still in the background.

I'm male and didn't get symptoms until 27-28 when I got typhoid and my stomach never recovered however looking back the symptoms had been present since I was a baby and just disappeared in my teens.

You either react or you don't, a little like getting pregnant really. You either are or not, regardless of if you have got a pregnancy test back.

With celiac disease the reaction occurs, when we are young our villi repair faster than they are destroyed but they are still destroyed ... villi are not made to be destroyed so quickly so when they divide they increase amongst other things cancer risk. On top of that having the immune system constantly fighting what it thinks is a virus or bacteria can damage the immune system and thyroid.

Its conceivable you might start eating wheat and mask the symptoms for a year, maybe two but its unlikely and it will come back. Meantime you are still doing damage to yourself.

Incidentally the best ay to prevent the baby developing celiac disease if they have the genes from you is through breast feeding. If you eat wheat during this time you will pass some of the gluten to the baby.

Wheather I were to nurse the baby or not genes play a huge role. I could only hope and pray that my children do not get what we all go through. It is not fun by any means.

  Ahorsesoul said:

Just because you do not think other family members do not have a problem with gluten does not mean they don't. This gluten problem can have no symptoms. It may show up years later with IBS, colitis, skin problems, bowel cancer or anemia (or many other problems).

I sure my dad has celiac disease. He'll be 90. I've cleaned up the toilet after he's used it. Looks like celiac disease to me. He doesn't understand why he can't control his bowels after eating pasta or bakery goods. So if you ask him if he has trouble with eating gluten or wheat, he will tell you absolutely not. He just knows he's always had this problem so it's normal to him.

Having a negative test does not mean a person does not have celiac disease or an intolerance.

Yes I know gluten and celiac disease can be hidden as well! I am very aware of it all. I know blood tests don't always come back saying you don't have celiac disease when chances are people will. It's not legit. I have a huge family. So, telling them all to get in line to get tested is less than likely to happen. Your father probably does have celiac disease, but as you said what he goes through is obviously normal to him. When in actuallity it is not.

  TrillumHunter said:

Have you ever heard of the book Celiac Disease: The Hidden Epidemic by Peter Green, M.D.? It's very informative and might help you to understand why gluten-free is essential for life.

Also, unless every single aunt, uncle and cousin has been tested, I'll bet someone else has it.

No, not every single relative of mine has been tested, but they all can eat wheat and not have any probs. If I got it from some where in my family, then the family member must of already passed. Ah well gonna have to continue to deal with it. Thanks all.

I know after I went through hormonal changes at 28, celiac disease popped up. I do know that besides menopause women go through the most hormal changes in thier late 20's and like I said that is when celiac disease popped up. So, I am wondering if after having a child could my hormones go back to what they were before they changed on me and be able to eat wheat again. Even if I have celiac disease? No one in my family has celiac disease or any allergy symptoms to wheat.

I might add that after I went gluten free and my sex drive went through the roof. It is nothing like it was when I ate gluten. It has been a very positive thing for me, lol.

Women, is it possible that celiac disease can cause my period to come late?? Several months back I had a normal period two months in a row. Then by the third month it had come 6 days late and just as my period started I got flu like symptoms. Vomitting, body chills a fever the works. I was stuck in bed for a week. And just as quickly as it came, it stopped the moment my period ended. I had my suspitions of it stemming from celiac disease, so I was keeping track of it.

Again two months my period came right on time. Now, I am in my third month again and my period is 6 days late. It's even taking longer to get here. I still don't have it. I did bleed during ovulation. The blood was mixed in with it. I am afraid that if I am late like this again I might get that same exact flu symptoms. I might add I am NEVER late. I always come every 28 days. I did nothing out of the ordinary to have my period be so late and no I am not under any stress or even pregnant. So, do any other women experience this and does any one know if celiac disease can cause all of these problems?

I can not tolerate any kind of oil it seems. So I am wondering if any one could recommend any thing to cook in its place. Would soy bean oil be ok? Even when I make homemade soup it requires oil. Could I use something else in its place?

Any tips for making a gluten/dairy/oil free pizza?? I sooooo miss the pizzas I use to be able to have from a restraunt the cravings have been so bad. That when I do make a home made pizza it doesn't knock it out. I guess my taste buds still remember how great the "normal" pizzas use to taste:(

Is there a significant difference between the two to really pin point whether you have either one?

I have never considered my system wimpy, my system is sensitive. As where I do work full time that has never been my problem. As I had said before only when trying to work out or do strenuous activities has led to problems. I have learned to not over do it on anything with my body. Thanks all for the rest of your input. As I may have mentioned earlier, I thought I may have been the only one. Glad I am not.

  JNBunnie1 said:

Cross contamination is CC.

It is entirely possible that the exertion of exercise combined with the toxins released when you do so is causing your symptoms. When you say 'makes my Celiac act up' that usually kind of means you got glutened. Anything else is NOT because of gluten, right, so not necessarily DUE to Celiac. I find myself that if I get stressed/anxious, I do get gastrointestinal symptoms. This has never happened because of overexerting myself, but it will happen if I get sick or injured or really nervous. It may be you just need to really start slow, take walks for a while, then pick up the pace a little at a time.

I understand what you are trying to say, but in the end what ever it may be that is triggering it; I have just decided it is so not worth it in the end. BUT I do want to live my life and not have these symptoms hold me back so I will take baby steps in doing so. Thanks.

  ravenwoodglass said:

Could you be getting CC'd somehow? Did you add in any supplements or any new foods or 'energy' drinks when you started working out?

What is CC? No I do not drink energy drinks.